PIL2005 - How you can help us

The new legislation has meant that you can personally help to improve the way information is supplied to patients. One way of helping to achieve this is by volunteering to take part in a user test, which involves completing a short questionnaire about a particular medicine’s Patient Information Leaflet (PIL).

If you would like to help, please continue to read through our website and feel free to contact us. As a way of saying thank you a donation on your behalf will be made to a registered charity for each completed questionnaire.

What is a User Test?
Before we raise any concerns we would like to inform you that this does not involve testing the actual medicine. We merely require you to imagine that you are an intended user of a particular medicine, review the information contained within it (which is usually in the form of a leaflet, called a Patient Information Leaflet or PIL) and then answer some questions on a one to one basis. The User Test is similar to an informal interview and usually lasts between 30 and 45 minutes. In return for your time and effort we will make a donation on your behalf to a registered charity.

How is the information used?
The information you supply will be analysed by us to determine how best to improve the PIL. Having processed the results, any necessary changes will be made to the PIL in conjunction with the pharmaceutical company in question. We will then produce a comprehensive report (including the updated PIL), which will be sent to the UK health authority (Medicines and Healthcare products Regulatory Agency) for their approval. Once approved the new superior PIL that you have inputted into will be included with the medicine.

How is your personal data protected?
The reason we ask for some personal information from you is because the legislation requires this. The information, including name, age, sex and occupation is essential to ensure that we are receiving an unbiased set of data for the questionnaire results. Rest assured that we hold all information securely on an internal database and only selected data is provided to the relevant Regulatory Authority and the related pharmaceutical company.

We will not provide this information to any third party without the express written consent of the person it relates to.

We adhere to The Data Protection Act 1998. Please click on this link to be taken to the Office of Public Sector Information (OPSI), where the Data Protection Act can be found. This Act (subject to a limited range of exemptions) gives an individual the right to access any personal data held by us about them. For further details on how to access the information we hold on you please email:data@pil2005.com

Further Questions?
If this does not answer all of your questions please visit the Frequently Asked Questions (FAQs) section. Please contact us if you would like further information or to ask a specific question.

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